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Neonatal Seizure Registry (NSR)

Timeline: 2012-2015

Funding: Pediatric Epilepsy Research Foundation (PERF)

PI: Hannah C. Glass, MDCM, MAS

Participating sites: UCSF Benioff Children's Hospital, University of Michigan C.S. Mott Children's Hospital, Brigham and Women’s Hospital, Children’s Hospital Boston, Children’s Hospital of Philadelphia, Children’s National Medical Center, Massachusetts General Hospital, Stanford University Lucile Packard Children’s Hospital


  1. To develop infrastructure and establish a multi-center registry of neonates with seizures
  2. To identify the etiologies of clinical and electrographic (EEG) neonatal seizures
  3. To identify current practices for medical management of neonatal seizures
  4. To determine whether differences in management affect short-term outcomes

Key Findings

  1. The most common causes of seizures in the neonatal period are hypoxic-ischemic encephalopathy (HIE)/neonatal encephalopathy, ischemic stroke, and intracranial hemorrhage.
  2. Neonatal onset epilepsy represents an important minority of seizures in the neonatal period (10-15% of neonatal seizures) and genetic testing has a high yield when no acute cause of seizures is found.
  3. High seizure burden is associated with short and long term adverse outcomes and mortality.
  4. Preterm newborns are more likely to have subclinical seizures.
  5. Approximately 2/3 of neonates require additional doses of anti-seizure medications for ongoing seizures. Children with high seizure burden, no hypothermia therapy, and abnormal EEG background are more likely to have ongoing seizures after the first dose of anti-seizure medicine.
  6. While initial treatment of acute symptomatic seizures is uniform across our sites (>90% receive phenobarbital first line), duration of therapy is highly variable. Three quarters were maintained on anti-seizure medications at the time of discharge home, however the range across sites was 4% to 91%, indicating highly variable treatment practice.


1: Glass HC, Shellhaas RA, Wusthoff CJ, Chang T, Abend NS, Chu CJ, Cilio MR, Glidden DV, Bonifacio SL, Massey S, Tsuchida TN, Silverstein FS, Soul JS; Neonatal Seizure Registry Study Group. Contemporary Profile of Seizures in Neonates: A Prospective Cohort Study. J Pediatr. 2016 Jul;174:98-103.e1. doi: 10.1016/j.jpeds.2016.03.035. Epub 2016 Apr 19. PMID: 27106855; PMCID: PMC4925241.

2: Shellhaas RA, Chang T, Wusthoff CJ, Soul JS, Massey SL, Chu CJ, Cilio MR, Bonifacio SL, Abend NS, Tsuchida TN, Glass HC; Neonatal Seizure Registry Study Group. Treatment Duration After Acute Symptomatic Seizures in Neonates: A Multicenter Cohort Study. J Pediatr. 2017 Feb;181:298-301.e1. doi: 10.1016/j.jpeds.2016.10.039. Epub 2016 Nov 7. PMID: 27829512; PMCID: PMC5322461.

3: Glass HC, Shellhaas RA, Tsuchida TN, Chang T, Wusthoff CJ, Chu CJ, Cilio MR, Bonifacio SL, Massey SL, Abend NS, Soul JS; Neonatal Seizure Registry study group. Seizures in Preterm Neonates: A Multicenter Observational Cohort Study. Pediatr Neurol. 2017 Jul;72:19-24. doi: 10.1016/j.pediatrneurol.2017.04.016. Epub 2017 Apr 20. PMID: 28558955; PMCID: PMC5863228.

4: Shellhaas RA, Wusthoff CJ, Tsuchida TN, Glass HC, Chu CJ, Massey SL, Soul JS, Wiwattanadittakun N, Abend NS, Cilio MR; Neonatal Seizure Registry. Profile of neonatal epilepsies: Characteristics of a prospective US cohort. Neurology. 2017 Aug 29;89(9):893-899. doi: 10.1212/WNL.0000000000004284. Epub 2017 Jul 21. PMID: 28733343; PMCID: PMC5577964.

5: Glass HC, Soul JS, Chu CJ, Massey SL, Wusthoff CJ, Chang T, Cilio MR, Bonifacio SL, Abend NS, Thomas C, Lemmon M, McCulloch CE, Shellhaas RA; Neonatal Seizure Registry study group. Response to antiseizure medications in neonates with acute symptomatic seizures. Epilepsia. 2019 Mar;60(3):e20-e24. doi: 10.1111/epi.14671. Epub 2019 Feb 20. PMID: 30790268; PMCID: PMC6443409.